Making Moves

Physiotherapy professor Dr Lynley Bradnam is spearheading a movement to raise awareness of dystonia, finally bringing hope and quality of life to a patient community.

Never heard of dystonia? Well that’s her point. “For a long time it went undetected and under-diagnosed as a neurological movement disorder,” says Dr Bradnam, Head of Discipline of Physiotherapy in the Graduate School of Health at UTS.

“A lot of patients report that it had taken them years to get a diagnosis because no-one could understand what was going on,” she adds.

Dystonia sufferers experience involuntary and uncontrollable muscle spasms and contractions that are painful and debilitating.

“Think of what it would be like to live in a body with a mind of its own,” says Dr Bradnam. “Watching TV, reading a book or working at a computer – simple things that we take for granted – can be extremely challenging.”

Dystonia can be generalised (affecting the whole body) or focal (in just one part of the body). Some forms are genetic, particularly in generalised dystonia, but the cause for most cases is unknown.

To add to its complexity, dystonia can be a symptom of or associated with another disease, such as Parkinson’s, and not just a disorder in itself. “It’s only recently that neurologists have gone to a lot of trouble to define it, label it and diagnose it,” says Dr Bradnam.

"The prospect of non-invasive treatments that offer long-term relief without side effects is not only great news for those with dystonia – but also for the world they interact with."

Although it is the third most common movement disorder after tremors and Parkinson’s disease, there are few treatments and no cure.

The standard treatment is Botulinum toxin injections. “A neurologist will inject the overactive muscles to weaken them, but the effect wears off after 12 weeks, plus there are painful side effects,” explains Dr Bradnam.

The other option is deep brain stimulation (DBS), where a neurosurgeon drills a hole in the skull, implants electrodes in the brain and connects them to a device permanently lodged under the skin. “This is highly invasive, very expensive and comes with no guarantee that it will work,” she says.

Dr Bradnam is seeing positive results from an unusual non-invasive therapy using magnetic pulses to the brain. Transcranial magnetic stimulation (TMS) targets the cerebellum, which is involved in motor coordination. “Recent evidence shows that this part of the brain plays a role in dystonia,” she says.

The neuroscientist and physiotherapy professor also aims to combine brain stimulation with more traditional physiotherapy treatments.

“One of the biggest challenges is getting patients referred to physiotherapists because they have mostly been treated by neurologists,” she says. “I’ve been looking at how the condition affects their everyday lives in terms of their functions – how it affects their vision, their walking, their balance. We need to do more research on how they interact with their environment.”

Dr Bradnam also hopes to see dystonia on the university curriculum. “Students know about movements related to Parkinson’s, MS and stroke, but if dystonia isn’t on the curriculum, how will our future physiotherapists know how to treat it?”

The reality is these initiatives are not possible without the other “C” word – capital. “Ultimately, research funds will help reduce the impact of dystonia in the community and improve outcomes for people affected by the condition.”

It also ensures that UTS remains home of some of the world’s greatest scientists.

Dr Bradnam is excited about upcoming collaborative work with Westmead Hospital, St Vincent’s Hospital and physical therapy professor Dr Teresa Jacobson Kimberley, from the University of Minnesota. “It’s a great way to get more patients involved and see how interventions are actually working.”

Her mission is to get the word out there about a disease that affects so many, yet is understood by so few. “The prospect of non-invasive treatments that offer long-term relief without side effects is not only great news for those with dystonia – but also for the world they interact with.